June 1, 2023
What a month May was! As we reflect upon Lupus Awareness month, the community continues to inspire. We celebrate how ManyOne Can make a difference, and we salute all the accomplishments of those that ARE making a difference every day. Thank you for your dedication and support!
Together, the community has:
- With the help of collaborative partners including people with lupus, clinicians, researchers, industry, government, and other non-profit entities, we launched the Lupus Landmark Study, the largest, long-term observational lupus study. The Lupus Landmark Study also is a key component of the new Lupus Nexus, a first-of–its-kind in lupus registry, biorepository, and data/knowledge portal.
- To keep you in the loop, we shared a report on the progress already made at the inaugural Lupus Accelerating Breakthroughs Consortium meeting that brought people with lupus together with the FDA and other stakeholders to discuss potential areas of focus.
Educated and Amplified
- Your submissions of My Lupus Stories showed thousands of people on social media worldwide the different symptoms lupus can cause and why accelerating research to deliver new personalized treatments is so critical.
- Lupus advocate, Yvonne Sterling’s inspiring video shared how she fought to regain her voice lost to lupus complications and now amplifies it to fundraise, educate, advance research – and to sing again.
- Lady Gaga amplified our efforts to raise international awareness of lupus on social media to support the Lupus Research Alliance in memory of her aunt Joanne who had died from the disease.
- On World Lupus Day, our Instagram friends reached 80,000-strong. Thank you for being a part of this amazing lupus community!
- 1,500 passionate walkers came together to raise nearly $500,000 for lupus research at the 20th Anniversary of the New Jersey Walk with Us to Cure Lupus.
- Donors like you helped exceed our goal to raise $25,000 in just 24 hours – on World Lupus Day!
- Your advocacy efforts to increase lupus research funding in Fiscal Year 2024 reached 112 members of Congress, sparking 55 Representatives to sign a letter from the Congressional Lupus Caucus stressing to the Appropriations Committee leadership the urgent need for research funding.
- Stay tuned, as our job is not done. We are bringing you a new opportunity to educate your legislators about the needs of people with lupus when they are back at their home district office in August.
Of course, the spotlight on lupus research doesn’t stop here – ManyOne CAN and ARE continuing to engage an even broader community, to generate more awareness and understanding of the disease along with more funding for lupus research. YOU can join us in so many ways. Click here to learn how.